CYSHCN Progress Report (October 1, 2021-September 30, 2022)

The 2020 comprehensive Title V needs assessment process led to the development of the Priority Need: Improve Care Coordination for children and youth with special health care needs/Improve Coordinated and comprehensive health promotion efforts among the child and adolescent populations.

Through thoughtful use of both Title V and additional state funds over the last year, the Children and Youth with Special Health Care Needs (CYSHCN) program focused their efforts on continuous quality improvement and the further expansion of the programs currently in operation. The goal for the program continues to center around assisting CYSHCN and their families in obtaining equitable access to healthcare services, while supporting individuals in their pursuit of living a healthy life.

While the COVID-19 pandemic continued to challenge the CYSHCN program during this reporting period, the program repeatedly adapted and evaluated service delivery methods as the team adjusted to the “new normal” rendered by COVID. This included providing services and support in ways that were respectful and accessible to families and youth, whether it was in person during a home or clinic visit, or virtually, via phone or messaging. The CYSHCN regional team worked to ensure there was no disruption in services and that families, children, and youth continued to feel supported, receiving the services they needed and requested. 

The CYSHCN Division continued to provide services and care coordination for the Hemophilia, Sickle Cell, Orthodontic, Hearing, and Special Formula programs, as well as Camp Burnt Gin, serving a total of 5,083 individuals.

During this reporting period, the CYSHCN Division evaluated current contracts and processes in a quality improvement initiative and found that the Orthodontic program, administered on behalf of DHHS, proved to be a heavy administrative burden, with this population requiring a limited number of resources or care coordination. Consequently, the Division, in partnership with South Carolina Department of Health and Human Services (SC DHHS), transitioned from determining medical necessity and providing prior authorization for services on behalf of Medicaid, to providing care coordination and/or financial assistance to those identified with a craniofacial anomaly only. Medicaid continues to serve their beneficiaries who need Orthodontic services under broader eligibility requirements through another partner. While this change proved challenging, it does provide the opportunity for the Division to increase care coordination and transition efforts, since the CYSHCN Division does anticipate a decrease in caseload for FY23. With this transition, CYSHCN regional staff were afforded the opportunity to attend 21 outreach events across the state, increasing the Division’s outreach and awareness and forming stronger community partnerships to support this vulnerable population.

The CYSHCN Division also continued to support those diagnosed with sickle cell disease and hemophilia, and further expanded these programs. The CYSHCN Division created a new centralized position, the Bleeding Disorders Program Manager, to better align and support our Sickle Cell Disease and Hemophilia Programs. This individual was tasked with being the point of contact for our Sickle Cell and Hemophilia CBO’s, providers, and academic medical centers, while continuing the work currently underway for the SC Sickle Cell State Action Plan, convening the SC Sickle Cell Disease Advocacy Team, and serving as the program lead for the Premium Assistance Program and development of the Sickle Cell Disease Voluntary Patient Registry. This individual bridged connections with the state’s academic medical centers to promote the development of grand rounds and educational webinars geared towards medical professionals as part of the SC Sickle Cell Disease State Action Plan. Through expansion of the bleeding disorders program, this individual now serves as the division’s point of contact for the Palmetto Health Collective, where the division serves as a community resource ally. Moreover, this program continued its support of the Bleeding Disorders Association of South Carolina (BDASC) by presenting current programs and services offered by the division for this population. The CYSHCN Division has also continued to experience success with the Bleeding Disorders Premium Assistance Program, providing insurance case management and premium and co-pay assistance to uninsured individuals since 2017. During this reporting period,16 individuals were served under the Hemophilia program, with coverage available for 19 individuals, and a total of 11 individuals were served under the Sickle Cell Premium Assistance Program. The number of individuals offered assistance through these programs have increased incrementally each year, and has expanded by 380% for the Hemophilia program and 550% for the Sickle Cell program since the inception of both programs.  

CYSHCN continued partnering with the Children’s Health and Perinatal Services (CHPS) Division’s Newborn Screening (NBS) Program for the launch MPS 1 and Pompe, newly added to the NBS panel, to provide care coordination, resources, community supports, and financial assistance for services.

The Division strengthened the current partnerships with the Craniofacial Clinics across the state, which served approximately 750 individuals with craniofacial anomalies. Site visits were conducted, more formal and ongoing communication with an identified point of contact was established, and a CYSHCN team member attended each clinic to provide resources and support to clinic attendees. This ongoing partnership is essential and allows individuals served in the clinic the opportunity to be referred to the CYSHCN program for care coordination, resources, family support, or financial assistance.

NPM 11: Percent of children with and without special health care needs, ages 0 through 17, who have a medical home.

Currently the national percentage of children with special health care needs, ages 0 through 17, who have a medical home is 42%, while the South Carolina data shows a total percentage of 49.7%, which is a slight decrease from the previous year. Ensuring the CYSHCN population has a medical home remains a top priority, and each client served by the CYSHCN Division receives education and information regarding the importance of a medical home as a standard of care, however, as the data suggests, there is still considerable work to be done in this area and medical home education will continue to be of utmost importance.

NPM 12: Percent of adolescents with and without special health care needs, ages 12 through 17, who received services necessary to make transitions to adult health care

Health Care Transition remains a critical component of the CYSHCN Division. Each year, the division evaluates current services and modifies them as appropriate to ensure the team is promoting transition efforts for South Carolina’s youth and young adults. This year, a flow sheet was developed to better capture our transition efforts outside of current resources, policies, and the transition readiness assessment, aligning with the second core element of transition services from Got Transition. This flow sheet is housed in the medical record and electronic health record and is updated annually or as needed, strengthening and guiding our ongoing transition efforts.

Workforce Development

The CYSHCN workforce continued to evolve and adapt to challenges with staff turnover and vacancies. During this reporting period, a total of fourteen staff were hired, five of which were considered leadership positions. In response to the number of new staff members hired, the CYSHCN team connected during a statewide meeting on September 29, 2022, whose theme, Building Bridges, focused on how individual work styles can strengthen effectiveness as a team. Facilitated group discussion included how to create a culture of openness when communicating on and across teams, as well as how to lead without positional authority so that all team members are inspired and empowered to lead our South Carolina CYSHCN teams to success. Additional sessions and group discussion centered on community education and outreach, staff orientation and development, the state's upcoming sickle cell disease public registry, as well as programmatic updates for hearing services and newborn screening. Each of the four regional CYSHCN teams presented unique showcases of their recent innovations, which allowed for idea sharing and space to appreciate the successes of our state's CYSHCN program while continuing to look toward the future. 

Family Engagement

The collaborative partnership between the CYSHCN program and South Carolina’s Family Voices organization, Family Connection of SC (FCSC), provides a fundamental element in the delivery of CYSHCN services by providing peer-to-peer support for families, outreach, specialty trainings, and resources specific to South Carolina.

FCSC implements a Parent Advisory Council (PAC) on behalf of SC DHEC which currently consists of 8 parents of children with a special healthcare need, from across the state, with varying backgrounds and viewpoints. The PAC meets quarterly throughout the year with the agenda being set by the parents and SC DHEC. FCSC facilitates the meetings with representation of SC DHEC/CYSHCN at every meeting. The PAC provides SC DHEC with input on policies, programming, and concerns from families across the state. This year’s meetings focused on how to expand and train new parents for the Council, as well as further define the mission and vision of the group. The goals are to be able to expand, recruit, and train new members, and continue to formalize the work. One success this year was that the PAC reviewed and provided significant input into Medical Transition tip sheets for parents and youth.

FCSC assisted CBG again this year and provided online and live filmed activities for youth and families. The “The Banana Dance” Video was introduced and featured parents and youth teaching a fun, interactive “Banana Dance” to get them up and moving and promote a healthy lifestyle. In addition, FCSC created an online arts and crafts activity featuring youth co-leading and participating in the activity! Everyday household items were used so any family could participate.

The CYSHCN program continues to anticipate an on-going, robust partnership with Family Connection of SC as we collaborate to better serve our families and youth.

Table 5. Significance* Testing for CYSHCN Measures